I was messaging with another mom I know yesterday and she said I was in a "parenting hell". I said to be honest, I didn't feel like this was hell. It SUCKS, majorly SUCKS, but there is obviously another diagnosis that I fear much more... which honestly isn't even off the table for our future given some of the medicines we may be trying, or just the fact that JIA individuals are more prone/susceptible to it....
But today was the hardest day for me since this whole thing began.
This morning I took Phoebe to the pediatric optometrist to have her checked for inflammation in her eyes. I don't know why, but I just was really optimistically thinking that they were going to tell me her eyes were ok.
Of course, Phoebe hates doctor's offices now. She was ok in the waiting room, but as soon as the sweet nurse called us in, she started to cry. Then, she got a spray in her eyes to dilate them. She HATED that, who wouldn't. Then we got to go back out into the waiting room for a couple of minutes, but then having to get called back in upset her yet again.
Well, then we saw Dr. C. She was GREAT. I think because I work in child care, I can always tell when people are really good with kids, and she had all the tricks down to get kids to cooperate. She did everything to me first and then got Phoebe to do it to. She said that today was more about getting Phoebe comfortable and had no real expectations of being able to examine her, that might just have to wait until the next visit. But she was so good with Phoebe, she got her to cooperate (mostly) through everything. Phoebe put her chin on the bar to rest it (though I had to tell her to put her nose into the apparatus because I didn't think she knew the word chin well enough--- and that totally worked) and was able to stay there long enough for Dr. C to see that her eyes were terribly inflamed. Later I learned the term: uveitis.
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Below I am including a description from the website http://www.kidsgetarthritistoo.org/(This is written by Kelli Miller and Mary Anne Dunkin)
"Eye problems can be a devastating complication of childhood arthritis. The same inflammation that causes painful, red, swollen joints can silently strike your child’s eyes. You usually cannot see that your child’s eyes are affected, and a young child may not be able to recognize that they are gradually going blind.
“The eye disease associated with juvenile arthritis can cause serious complications and even blindness, if not detected in time. Unfortunately, there are few [noticeable] symptoms, so it’s really very important for your child to have regular eye exams,” says David Epley, MD, a pediatric ophthalmologist in Kirkland, Wash., and a former president of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS).
Below, we discuss some eye problems commonly diagnosed in kids with juvenile arthritis and provide information regarding eye exams and treatment.
Uveitis
Uveitis is a serious complication of juvenile arthritis and the most common non-joint-related complication seen in kids with the disease. It requires immediate medical attention and prompt, early treatment to help prevent vision loss. “Children who are diagnosed with advanced uveitis have a high risk of complications,” says Wendy Smith, MD, an ophthalmologist at the Mayo Clinic in Rochester, Minn.
The term “uveitis” is used to describe inflammation in one or more of the inside structures of the eye, which include:
- Iris - the colored part of the eye that controls the amount of light entering the eye.
- Ciliary body – controls the lens shape, helps the eye focus and makes the liquid that fills the front of the eye.
- Choroid – a layer of blood vessels in the back of the eye.
- Retina – the thin tissue lining the inside of the back of the eye
- Vitreous humor – the clear gel that fills the inside of the back of the eye
The type of uveitis your child has depends on the area or areas of the eye affected:
- Anterior uveitis (including iridocyclitis and iritis): This is the most common form of JA-related uveitis. Inflammation occurs inside the front of the eye (the anterior chamber) or in the iris and/or ciliary body.
- Intermediate uveitis: Inflammation of vitreous humor.
- Posterior uveitis: Inflammation of the retina and/or choroid."
Phoebe's eyes did not fully dilate and she described the iris as "Sticky."
I asked how often she saw this and she said Phoebe was the youngest she's seen, but then at this age they are also particularly hard to examine.
Dr. C. prescribed a daunting medicine regime:
- cyclogyl eye drops 3 times a day for 1 week, then once a day for the second week to dilate the eyes to absorb medicine better (these may burn) and
- lotemax eye drops, topical steroids, to be administered HOURLY for when she is awake for two weeks.
- she also wanted to put P on oral liquid steroids to be a systemic medication, but would need to call Dr. B to determine the dosage for P's weight and age
This just crushed me. We are going to have to hold our baby down and force her to take eye drops for every hour for two weeks, until our next appointment. She was literally considering having me wake Phoebe up in the night to give her eye drops. She took pity and decided not to.
I guess even with Phoebe's pain and the risk of permanent joint damage, due to the JIA, this is the first time I have felt that Phoebe was really very, very sick. Her eyes must be very bad and in real danger!
We also have to practice having Phoebe put her chin on a table and practice holding a pen or something, like a pen, right up in front of her eye (without poking her eye) so that they can check the pressure in the eyes. If the inflammation causes too much pressure, she can get cataracts. But she can't be on the steroids for too long, because they will also build up pressure.
She said that there is always a spectrum of JIA and how they respond to treatments, some people do and some people don't and require other methods.... I really hope Phoebe responds!!
I dropped Phoebe off at Meme's and went to work, kind of in a daze.
After school, I went with Cordelia to pick out a first birthday gift for a friend's party tomorrow. While we were shopping, Dr. B called me.
She said that given the findings of Dr. C, she is not recommending that we add an oral steroid. That would be too much steroids for her whole body, building up pressure, with negative effects. Instead, she thinks it is time to start Methotrexate (MTX), which should also help with Phoebe's eyes. She still didn't have the ANA results from the latest labs, but Dr. C said she would bet $100 that it will be positive.
She started going over some of the side effects/ risks involved with MTX. It is an immuno- suppressant, used in chemo therapy. Phoebe will be taking a much lower dose than a cancer patient would though. It can have an impact on liver function and blood counts, so Phoebe will have to have regular labs. Phoebe will be more susceptible to infections and she will not be able to have live-virus vaccines (we've checked; she was up on all her shots except the Hep A). The labs and physical exams will also be monitoring for signs of malignancies, which can develop in her blood or her lymphnodes.
This is just so scary, but from everything I've read, many adults today who had JIA say how much they wish they had had the treatments they have today when they were younger-- it could have saved them from permanent damages. Just gotta cling to the science and hope the risk is low enough and trust my doctor knows her shit. Which she seems to.
Along with the MTX, Phoebe will need folic acid. She started talking about having it in a tablet and crushing it, or getting a children's gummy or chewable vitamin that contains it.
MTX can also cause nausea, head aches, and dizziness. It can cause sores in your mouth. Some people start to feel anticipatory nausea, when they know they are about to get the shot.
Around this time, Cordelia said she needed to go poop, so I got a little distracted taking her to the bathroom! Dr. B suggested she call back later; I said after 4 or 5 was good.
I took Cordelia out for a snack. She got chocolate scones at pete's coffee! I wanted to have some time to just chill with Cordelia, but it was so hard to focus. I feel like she is getting the short end of the stick when it comes to my attention lately. Understandably, of course, but it still sucks. Even as we were sitting there, my brain was thinking of questions to ask when Dr. B called back. Then, as we were finishing up, Dr. Jen called to check in. She said she keeps getting notes about Phoebe from other doctor's and she keeps being like, "Oh, crap.... Oh, crap.... Oh, crap!" She wanted to know how I was and I said this was my lowest day yet. She said when she saw the HOURLY eye drops, she thought that had to be some sort of typo because HOW?! I asked her about some dry skin Phoebe is having on the back of her thigh, she said it was ok to do a 2.5 % cortizone cream we already have....
Let's see, then I started to drive to the pharmacy to get Phoebe's eye drops, but my phone died and my car charger has a split wire and only charges half the time. I just need to replace it. With no battery, even plugging it in, it just started to endlessly loop through restarting and shutting down until it froze. Traffic had started to build up and it was getting close to 4, when Dr. B could call back, so I just went to Jason's parents. Found out Phoebe had napped like 30 mins the whole day. Why is she so hyper?!
Jason's mom had seen me pretty up set after the eye appointment and had a nice chat with me about how we are doing everything we can and we can't change her genetics and reminding me you're allowed to cry and have bad days. Yup and this is a bad day.
With Phoebe so tired, I just went home and asked Jason to get her meds later. But then he realized he didn't have her health spending card with him, so he'd have to come home anyway.
Dr. B called and we discussed more things. Phoebe started to freak out so I bribed her with candy to be quiet so I could talk. We start to talk about MTX and getting the prescription filled and some various scheduling and pharmacy complications came up. She had me call around and then she would call back. Once we had the meds/syringes, we can come to Palo Alto to have a lesson in how to administer the injection. Sounds like we are going on Tuesday. A nurse is going to teach us, but Dr. B plans to drop in to see Phoebe; we are also keeping the March 28 th appointment. Phoebe is getting A LOT of attention--- doctors are worried about our baby. That doesn't feel good!
Jason arrived to get the pay card, and I asked if he'd take Phoebe with him to get the prescription so that I could really focus when Dr. B called me back. I thought he'd be gone a very short amount of time...
Dr. B did call and we are just going to move all our prescriptions to Walgreens because CVS just doesn't contract to stock JIA related drugs enough apparently! She then went over all of Phoebe's labs that were back so far. I can't really interpret them. Phoebe is a little anemic, but not super concerning. She is RF Negative, yay. Her inflammation levels are elevated, some have slightly gone up since January. I'm so tired now I can't think of everything.
Jason ended up getting stuck at Walgreens for FOREVER. One of the meds was going to be like $175, but the pharmacist gave him some sort of card to call and activate and suddenly it was $25. WHAT. THE> ACTUAL>FUCK. How do people come up with these prices?!
While he was there, the MTX prescription came in and they were able to fill that too. But poor Phoebe was stuck waiting around (at dinner time, though she'd had a lot of snacks) with like no sleep. I thought they'd be back in 20 minutes but they were gone like an hour and a half.
Also during this time, I had a lady I was texting with come by to pick up Cordelia's old toddler bed from our Craigslist exchange.
I kept texting and calling Jason, I couldn't believe he was STILL at Walgreens and was basically just about to have an anxiety break down. (It didn't help that I totally over caffeinated with that iced tea, which I didn't even finish, but it still gave me the jitters!)
I just wanted them to come home! Today was really too much.
We gave Phoebe 1 does of eye drops before bed. Of course, she cried and cried. Then I put her to sleep, she was out in minutes, but has already woken up crying once---- I forgot, on top of it all, Phoebe has a cold with a runny nose, so she can barely use her pacifier.
And Cordelia is still coughing from like 2 weeks ago. I can hear her coughing in her sleep.
Tomorrow we get to start the hourly eye drops. Definitely readjusting my idea of parenting hell, today. I hope once we are actually doing the eye drops it won't be as bad as my imagination, but I really don't think that will be the case.
PARENTING HELL DAY!!!
Hopefully we can get to the better days ahead sooner rather than later!
so sad. every hour. ugh. But, I know you're a strong Mom -- you and Jason and C & P will get through all of this. Sending healthy thoughts!
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